The Hermit Club
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Well hermits, I feel more than ever like crawling into a hole and pulling it in after me. I just found out today I have mets to liver. Two spots turned up on an ultrasound I had in December to check out something else, and after a delay of about a month (CT scan canceled once because I was in the hospital with toxic reaction to chemo, and postponed a week the next time round because I had had a different scan the day before and you're not supposed to have contrast twice in under 24 hours) and two inconclusive results, I had a biopsy last Friday to pin down what they were. Today my onc called with the biopsy results...liver mets.
Last week I went to the Home Show with a friend of mine from choir. I've told her I don't know why I don't want to tell anyone where my new house is, but I don't, so I won't. We went out to lunch the first Sunday I was able to get back to church after being hospitalized, and everyone pounced on her at the next choir practice and peppered her with questions. She says maybe now she sees why I am feeling so secretive. Anyway this new diagnosis has just doubled my reluctance to tell anyone anything--except my immediate family--well, them and you guys. In fact I haven't even said anything to most of my family yet, my mom is the only one who knows because she picked up the phone before I did when my onc called and heard the whole conversation (No objection from me, I could hear the TV over the phone and if I didn't want her to hear I would have asked her to hang up). And even less than my choir mates do I want to tell anyone at my job. They know I have cancer but my original dx was early-stage and I told them there was a good chance I would live to be an old lady and die of something else. Maybe not so much now but I don't want to talk about it with them. I've been eligible to start drawing my pension for several years now and I'm having a hard time not just sending in my retirement application tomorrow, but I'm going to force myself not to do that quite yet. My onc is going to request a PET scan to see if there are other mets beside the two on my liver. If not, maybe they can be removed surgically. I hope so. I was planning to stay on the payroll until after DIEP surgery that was scheduled for the end of April, but if the mets are operable that will have to be postponed and I'm darned if I am going to keep going until after an abdominal operation plus delay of maybe a couple months to heal up from that, and then DIEP and recovery. That could be the end of the summer. No, and no, and no!! I am not waiting that long to retire! Maybe I will download the form and fill it out except the effective date, and not send it in yet. That might get this urge out of my system.
I want to go live in my housethat I bought! I will have been living with my mom the better part of a year by the time I get moved in. My mom has been great to let me show up on her doorstep with basically no warning at all and move in like I own the place, but I am getting so antsy to be back in my own place, even though it's an "own place" I've never lived in before.
But right now I just feel stunned. I think I was about the same when I got my original dx. I got my feet back under me after that, maybe I will be able to do it again. My little brother will know where I'm coming from, he has colon cancer and was stage IV from the beginning, which was 9 years ago. I guess I probably was too--I just didn't know I was, until this afternoon.
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Oh curveball what horrible news to get---Personall i think don't do anything until they figure out exactly what they are going to do--A friend of min got mets to liver and had the cyberknife done---don't know much about it---but it somehow smashed the tumors tha were there and she does get infusions( and no cutting for an operation?) but not as often as chemo. Breath easil and wait til u'r Dr.s tell u what can be done.They have to get all the tests and facts together to help u. (((curveball))) u'r in my prayers--This damn disease
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curveball I am so sorry, things just hit you when it is unexpected....I understand everything you say...rest, eat and take care of yourself and you will figure out what to do.....
I don't know anything about cyberknife...
Jazzy how r u today?
I have to geta CT scan also, haven't had one since July and that i when we found out the gemzar wasn't working had 1 treatment of taxotere and got septsis with the abcess was in the hospital for 12 days and off chemo for 2 months (my choice)....just had completed my 4th round but I am on it until it doesn't work and then on to another one or until it is stable and then he said something about putting me back on hormonal therapy, whatever....so will make the appt today and then he said depending on what that says getting a PET scan haven't had one of them since 2009 when I was diagnosed with the recurrence....i do notice that the lymphnode under my arm is going down, but the mass in my chest that is on the chest wall that i can feel with my hand is still there....so maybe it is working......now about the stupid chemo I got yesterday, well really the pre-meds...I get 7 things and that isn't even including the sodium (flush) I get between which is why I am there for 4 hours...anyway they give me 2 anti nausea medications and well they aren't working and just saw the dr. yesterday...have to tell him...was nausous last night an am nauseous right now......the friggin steroids usually have me up 27 hours at least, but am now taking benedryl and it worked until 430 so have been up since then and the stroids will keep me speeding until tonigh......so now that i have bored you with this long message...I will move on...thanks for listening
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Good morning hermits:
Curveball- let me just say I am so sorry to hear about the mets to the liver. I think one of the hardest things about all this that we are given a lot of early information about things being "early" and that we will be fine, but then as the tests to on, we found out more that shocks us to our core that contradicts those earlier statements. I hope you can just be present with this news and let it settle in. It sounds like the doctors are looking to see what they can do to help you. I see many other women on this thread who have mets and think many here can help you, support you. We are here for you.
I agree better to not say anything to work. I have kept my medical care private from my professional community as well. Right now, you don't have enough information to know what you need to do next. Maybe once you know more from your doctors, you can decide if retiring feels like the right thing to do. I remember going through some similar reactions when I first got diagnosed (about following through on a new consulting gig I had just agreed to). In the end, I just told my client I needed to come a bit later than expected. I have been able to work since Dec after I was recovered from 2 surgeries.
And it sounds like you have family to help you through. Including a brother who has also had cancer as well. The more people you tell, the more you have to deal with other people's fears, questions, judgements, and advice. This stuff is hard enough without having to deal with all that! Surround yourself with the love of your family and close friends as you adjust to this new information.
Blondie and Cami (everyone else too) - Day 4 of my internal rads starting this way. I started feeling less well yesterday, tired and find myself with some diarrehea too. Not sleeping as well. Taking it easier as the week goes on and tomorrow I will be done, the catheters come out, and I fly home. I plan to just rest at home the whole weekend (can't wait to sleep in my own bed again!)
And Blondie, you are still having quiet a week with all this. Hope you are able to get some rest later today since you were up early. I slept poorly last night myself.
I hope everybody has a decent day. End of February already.
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Curveball ... try to breathe and see what the dr has to recommend. One step at a time. I think it is normal to feel very private right now.
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It's amazing what we learn to put up with and deal with when we're forced to. The mets suck but I know you will do what you have to do to combat them. Just the same as the rest of us will do if we're faced with that reality too. I do hope that they don't find more and that they can easily remove what they found.
I swear sometimes it just feels like more and more gets piled on me to deal with lately. I get one trial out of the way and get another with no break it seems. My feet have just been hurting and peeling and blistering a lot (mostly just the one) and it's uncomfortable to walk around. I had hoped that once I recovered from chemo I could start getting my little bits of exercise done again but that plan is still on hold until this foot thing clears up. I never realized that the side effects from chemo would last so long and have new ones pop up weeks after the last chemo.
Anyways, other than that I'm doing well. I have a CT scan tomorrow. It's been delayed about a month already because of my creatinine numbers but my test last week got me down right at the top end of 'normal'. I swear that .3 one way or the other shouldn't make any difference. I've read enough to know that 'bad' is much higher than my numbers were. My MO wants the scan because there was an area of slight concern on my first CT scan back in August before the chemo. I probably should have asked more questions about it back then but stuff was going on so fast and I was just overwelmed by it all. I hate these scans though. I don't like having to hold still and be in those machines.
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@Jazzygirl, I was already planning to retire this spring. In fact, I just gave unofficial notice of that on my performance review, which was earlier this week before I found out about the mets. I have to read the review, add any comments I may have, sign it and return to my supervisor. One of the comments sections is "Career Plans" or something like that, and after discussing it with my support group on Tuesday I put "Retire" as my career goal with "Spring 2013" as the target date, and as a comment I had not chosen an exact date but planned to go within the next few months. I had also already decided, back when I got the original dx, that I wasn't going back to the office after treatment. At the time I felt like I ought to say so, but support group talked me out of it. My plans to retire this spring should be no surprise to anybody at work, I have been talking about retiring around now for three or four years. I think I will fill out the papers, but I won't pick an actual date or submit the request until at least after I have this PET scan and find out whether the mets can be removed surgically. I hope so I hope so.
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good for you curve, I am sort of retired, I get SSD disability but I work as on on call at Macy's and they are so gracious knowing of the cancer and don't give me a hard time about not going...I work a couple of days a month if I can get the hours around the chemo, but I am 3 weeks on and that means I really can't do anything until maybe sunday or monday....but it is getting more into tuesday or did the last time.....I am only doing 4 or 5 hours if I can also.
I made the appt for my Ct scan next week, hope yours is ok......
Jazzy take care of yourself....
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Curveball we all pray u'r mets can be treated too. we're ll on u'r side and hope for the very best results. Everything hppens so fast sometimes with is damn disease it jolts u. I hate this for all of us.
Jazzy after tomorrow u'll be home like u said in u'r own bed and u can relax much better, sorry you are not feeling well.
Jinkala oh I hate those machines too--and not moving is my hardest cuz I tend to talk alot and my nose always gets itchy every single time. I have my mri next week so I know the feeling of just get it oer with. I know I should have gone this week but they said this is the bigger machine so I waited to get this--see if it's any better. My sister says the rosary with her eyes closed everytime--she has patience. I don't. LOL
So here's to a day that hopefully brings us to feeling well and better news.
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CSMommy: Just reading this thread and joining late. Hope you don't mind. I have a seven- and and eight-year-old. Really "feeling you" regarding the Ativan. I was given 30 tabs. Now I'm thinking, What if my PCP doesn't give me another prescription for this? Have MRI and breast surgeon next week!
I stay up nights worried very often -- but don't take an Ativan because I want to save them. Really understand about the school shopping... I know that was some time ago!
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Hi again hermits:
Jinkala- sorry to hear about your feet. I get lots of advice to eat healthy and exercise, yet have been too fatigued most of the time to even consider doing much on the later. I hope your CT scan is okay. They watch us all very closely going through this.
Teka- I with you, may March be kinder to us all!
Hang in there sisters!
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Hi bobogirl--Oh u small kids this is so difficult. U really need u'r rest. The norm for the Drs. is to give us anything we need, for sleep, anxiety, pain whenever we ask- They migh give u 30 to see how u handle it and if it works--I get 100 now of almost anything, They really try to keep us comfortable and rest when we need to. Talk to him/her about this they're of no nuse in the bottle if u'r awake at nite so talk plain to u'r Dr. and what u expect them to do to help u thru this.
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Hi hermits: getting ready to go back for round #2 in another hour. Then Day 4 of 5 will be done! Feeling a bit better as they day has gone on.
Curveball- so glad you had the plans in the works to retire this spring. That will make things easier for you if you feel ready to do that. There are pluses and minuses to the whole "work thing" when you are going through this. Some women are able to work through treatment, others not so much. You just take super good care of yourself.
Cami- thanks for your kind words to myself and others. I liked what you said about your sister and the rosary. Whenever I am having anything done (like rad treatments this week), I repeat the 23 Psalm to comfort myself. You know, "the Lord is my shephard I shall not want...."
I am wishing for good energy, clear CT scans, and better days for all the hermits here!
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Thank you, Cami! I will call the PCP and see what happens. I dread being scolded.
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OK Jazzy u'r almost done----i more after today. Then that's it. YAY
bobo I really was like u with Drs. at first I felt like OMG I don't want to bother them or take up to much time--etc. Well In a way I still am cuz I wait to long for things--but that's what the Drs. are there for not just to treat our immediate care but calm s for all that we go thru and make us comfortable as possible. I learned that after a ittle while and realy unless u have someone mean, which I doubt they always give u something to take stress away cuz that's an enemy for us. So sleeping and pain we can get something for at all times u just have to be honest about how u feel.P>S> Alomost everyone on these boards are on some type of med to help them, anti-depressants, anxiety. sleeping aids or pain pills or almost all or all of these meds--So don't put u'rself down or in fear of taking anything--My motto now is Say yes to drugs. LOL
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Just catching up... Curve so sorry to hear about the new diagnosis. We are here for you. (((Hugs)))
I agree with teka, hopefully March is a better month for all.
(((Hugs))) to all. I'm sorry so many are facing hard times right now.0 -
curveball... hugs and prayers. I agree with all... deal with it all how you can, and don't worry about the rest. No need to broadcast, especially since there are options most likely to hear rom your drs that will help give you more info to make decisions with. We are all here to support and care.
teka--amen
jazzy--safe trip home!
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Curveball, sorry to hear your news. Hopefully it is just in the one spot and be surgically removed. (((Hugs))) for you! I totally understand keeping dx quiet. No one at my work knows about mine. For me, it is easier that way.
Blondie hope you are feeling better.
Jazzy, Yay you are all most finished with your rads! Safe trip home and good rest, relax and peace for the weekend.
HI! Skittle, Markat, Camille, Jinkala, Teka, bobogirl and all hermits.
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Hi FL warrior!
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am here, nauseous and tired was up at 430 although I did sleep....
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@skittle after I wrote that about not wanting anyone at work to know I have mets, it occurred to me I might have to renew my FMLA application and that info would be on it. I think I have to get my supervisor's signature at least for that. I have a ton of sick leave, but don't want to burn it up because we get a great benefit, called VEBA, at my job. If approved by a union vote at the time of contract negotiations (and it was approved the last time around), 35% of an employee's unused sick leave time goes into a tax-deferred health savings account at the time of retirement. The account grows tax free and IIRC the withdrawals are tax-free also. Before cancer, I had over 1100 hours of unused sick leave, and I still have a little over a thousand of them left, which will give me a five-digit VEBA balance to start off my retirement with. VEBA was supposed to be my "slush fund" for expensive dentistry, since I plan to pay out of pocket for dental care in retirement. I haven't had a cavity since I was in grade school, the dentist never has to do anything to my teeth but clean & polish. But if in the future I ever needed a crown or an implant or root canal, that VEBA account was how I planned to pay for it. That thousand hours of sick leave was accumulated over my entire 27+ years with this employer. It's irreplaceable and I don't want to lose it.
But now, with mets, does it even matter?
Or maybe I will use it for something different, that isn't covered by my health plan, like that testing to see which chemos your tumor is sensitive to...
@Jazzygirl, I am SO ready to stop working. Even if my lump had turned out not to be cancer, I was seriously thinking of selling my house right then & there, and pulling the plug as soon as I had a buyer. When it turned out the lump was cancer, I put my house went on the market as fast as I could get moved out of it. Now, I can't think of a single good reason to continue working. I don't need the money, by this time last year I had enough to last me until age 100. About the last reason I wanted to stay on the payroll was to avoid switching from employee coverage to retiree in the middle of treatment, but now, maybe I will be "in the middle of treatment" for the rest of my life, so that's no longer a reason to delay retiring.
Thank you everyone for your hugs and prayers.
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Curveball u really are organized with everything--and if u'r money is in order and u really want to retire go for it. I was kind of forced retirement but it's OK-I was vested over 20 yrs. but I did plan on working longer. But u'r sitution is so different from mine and i hppy for u on that part. If it was planned then retire and enjoy u'r retirement. My sister has mets and still going well after 6 yrs , but she's still working and she's in her 70's so don't be so quick to count u'rself out--There are a lot of things they can do today for mets that 10 nyrs ago they couldn't do --So relax a little and go on with u'r plans and enjoy u'r life work-free. That will lower stress to do what u want.
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Good morning hermits: Day #5 and my final day of radiation treatment. I cannot tell you how glad I am that this part is wrapping up! It is certainly not as bad as other things I have gone through (or any of you are going through with chemo), but like all these treatments, it wears on you.
I chatted with a nice woman at the center yesterday and referred her to this web site. She is doing external radiation and is like us, trying to keep things private and/or a bit of a hermit going through her care. She loved the idea of a support group on line.
Curveball- it is good you have really thought through all the work related/financial issues. I wonder if you do need to go into detail on your FMLA application about the mets, maybe so. Will you continue to have some sort of med benefits when you retire? Like private insurance, Medicare, etc.? It seems these days, most people have the money to retire but are in an insurance gap. My sister is in that situation, a few years shy of Medicare but wanting to retire sooner. You will make the right decision for you and we are here to support you!
Blondie- so sorry about the nausea. I hope you can get some relief from that soon.
And to pipe in about the meds, my doctors have given me scripts to for sleeping, anxiety, etc. I don't need to take them all the time but if you are going through a tough time, they do help.
Thanks to everyone on the good wishes for my final day and trip home. Fortunately, I only have a short flight this evening, but it will be a long day. But I am ready to get this done.
TGIF and blessings to everyone as the week ends and weekend begins. Will pop in again after I am home and rested.
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I got a letter from our personel dept last week saying that I needed to have my doctor fill out my FMLA paperwork again for the next six months. It's such a hassle getting forms filled out at my HMO though so I'm going to just go off of FMLA since I'm done with the chemo (and the week long bouts of sickness) and am only taking a couple of days a month. They never required any details on my FMLA paperwork as to the actual nature of the illness and as far as I know the law (could be just CA law) doesn't allow my employer to ask.
Doing okay today - I'm at work but only until about 11:30 and then I need to go home and get ready to go get my CT scan done. Bleh
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@Jazzygirl, the doctor's part of our FMLA form is pretty detailed, so the HR department has enough info to evaluate whether you qualify or not. I guess the forms vary from state to state and employer to employer. Now that I think of it, I doubt that mets treatment with an AI only would qualify, because unless the particular AI causes bad SE for a specific employee, the treatment wouldn't affect the ability to continue to do one's job. Surgery to remove mets would qualify, more chemo would and reconstructive surgery would. I think HR is prohibited from revealing the info on the forms except to the employee's supervisor, but if, after telling everyone in January that I was done with chemo, I start taking FMLA again in March, people will probably draw their own conclusions. I think I'd rather just retire, and then they will only think "no surprise, she's been hinting for years that she was going to retire in 2013".
I am an employee of local government, and will be able to continue almost the same medical coverage after retirement and have the premiums automatically deducted from my pension check to ensure there is no gap in coverage, which is a huge blessing.
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Jazzy YAY u'r almost home--let us know when u can that u'r tucked in u bed with homestyle comfort.
Jinkala and if u'r up to it and can go back to work u might as well--just don't hurry u'rself to much.
Curveball I think u really thought this thru so happy retirement--u deserve to and finally do what u want.
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Oh - I have been working through the whole ordeal. I had been on FMLA intermittant leave - which is basically submitting one form to cover a lot of off time interspaced with work. I work for a municipal government as well though I am not close to retirement age yet.
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Hi ladies:
Almost done! My rad onc here suggested I return in six months with my follow up mammos, and to make sure I am doing okay. I like the idea, and will make my trip here a bit more of a vacation next time and asked my sister to come meet me (she will be done with her treatment by then too). I have called these trips out of state my "medical vacations."
He also suggested I come back once a year to see him for my annual mammo review and to be sure I am doing okay. That would be in addition to my local med onc who will also be following me. So I have an apt here again in Sept, but won't have to have any procedures the next time. I am sure I wil be holding my breathe after all this, hoping nothing new is showing up on those films. One day at a time, right?Jinkala and Curveball- I think you are right, some things qualify for FMLA and others don't. The only time I ever used FMLA was to help my elderly mother. I know my sister got FMLA for her chemo and surgery. She just came off FMLA as she used up her hours, but still has one surgery left. I think organizations have to be very careful about who they share the info with. There are all kinds of regs around sharing personal health information via HIPAA which also touches this whole thing.
Jinkala- good luck with the scan.
Cami- thank you as always for the good wishes. You are an inspiration to me many days.
Over and out for awhile hermits. My spirits are coming up after a long 9 day process.
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YAYAYAYAYAY JAZZY!!!
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Hi fellow hermits:
I am glad to be done with my rad treatment and home again! Been taking it easy this weekend and getting some additional rest after a long week plus, along with a super long day on friday with my final treatment and flight home. I go back to work at my client site tomorrow, but will continue to pace myself.
Hoping everyone is having a good, restful, peaceful weekend. Blessings to you all!
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